About Me

Hi! I’m William “Lee” Dubois (called either Wil or Lee, depending what part of the internet you’re on). I’m a diabetes columnist and the author of four books about diabetes that have collectively won 16 national and international book awards. (Hey, if you can’t brag about yourself on your own blog, where can you??) I have the great good fortune to pen the edgy Dear Abby-style advice column every Saturday at Diabetes Mine; write the Diabetes Simplified column for dLife; and am one of the ShareCare diabetes experts. My work also appears in Diabetic Living and Diabetes Self-Management magazines. In addition to writing, I’ve spent the last half-dozen years running the diabetes education program for a rural non-profit clinic in the mountains of New Mexico. Don’t worry, I’ll get some rest after the cure. LifeAfterDx is my personal home base, where I get to say what and how I feel about diabetes and… you know… life, free from the red pens of editors (all of whom I adore, of course!).

A Treat not a Trick for this Halloween

Friday, October 03, 2014

The other shoe

I was
finally beginning to feel my old self again. Instead of making energy to do
things, I had energy to do things. I
could read books without falling asleep after two paragraphs. My attitude was
improving. I actually cut the weeds for the first time this year, and put up
that picture in my mom’s office that I promised to do back in December. I
looked forward to weekends and workdays. Life began to be worth living again.

More than
that. I came home one night about a week ago and I was thinking that really, I
was about as happy as I’d ever been in my life.

So
naturally the other shoe dropped.

I still
haven’t come to grips with what has happened, but maybe the telling the story
will be therapeutic. For background you should know that over the last nine
months my blood sugar control has been crap. Partly lack of energy to do it
right. Partly lack of energy to eat what I should; or to resist the temptation
to not eat what I shouldn’t. Partly too busy taking care of everyone else to
take care of myself. Partly lack of access to the best tools available.

All
excuses, really.

Over the
last nine months my blood sugars have been running in the 250s. Some days bolus
after bolus after bolus did no good in bringing them back down, but most days I
didn’t even bother to try. Then one night as I slid into bed, the fire started.
In my feet, a tingly, electrical burning feeling.

I had
developed neuropathy. After a decade of preaching diabetes won’t hurt you if
you just keep your sugar down, I found that ignoring my own sermon lead me to
hell. Two days later, it started in my hands.

But the neuropathy
isn’t the other shoe.

I live in
a crowed household, and with early fall came early flu. Rio got hit first. Then
Debs. Then her mother, and finally my mother. Oddly, I didn’t get sick. Usually
I’m the first to fall, the hardest hit, and the one who stays sick the longest.
I chocked up my escape to the fact that nature always leaves one member of a
tribe uninflicted by plague to nurse the others. I fully expected to get double-sick
as they rebounded, but it didn’t happen.

I guess
the cells left alive in my body after the last nine months are such tough
sons-of-bitches that no common flu virus stands a chance against them.

Rio missed
the first two weeks of school. The virus impacted my mother-in-law so severely
her mental state was reduced to the point she became completely helpless. She
couldn’t talk. She lost the use of her hands. She couldn’t feed herself, dress
herself, or even go to the bathroom on her own. She still hasn’t recovered, and
now either Debs or I must be with her 24-7.

But the
super-flu isn’t the other shoe.

It only
led the way.

The flu
worked its way into Rio’s lungs. After years of not having to use an inhaler,
his asthma returned. The nebulizer had to be dusted off again and fired up
again. His cough was nasty and deep. We took him to his doc, who Dx’d him with
pneumonia. The only question was whether it was getting worse or getting
better. The doc couldn’t hear anything in Rio’s lungs and, concerned they might
be nearly full of fluid, ordered a chest x-ray.

But the
pneumonia isn’t the other shoe, either.

In fact,
the chest x-ray showed Rio’s lungs were clear. He was on the mend. But there
was an incidental finding on the x-ray. Rio’s spine had a little twist. At
about the level of his sternum, his spine detoured to the right side of his
body, then returned to vertical, much like the body of a boa constrictor might
look like where it detoured around large knot while slithering up a tree.

Scoliosis.

Rio’s doc
wrote a referral to the peds orthos at University Hospital. I called for an
appointment and found that the only pediatric bone guys in the state are out-of-network
for my son’s insurance. The largest insurance plan in the state refuses to
contract with the largest health provider in the state.

Welcome to
the world I live in every day.

A couple
of weeks later, we pushed through an authorization. In the meantime, the
radiologist’s report came back with the official word on Rio: Moderate thoracic
scoliosis. Rio’s doctor was almost apologetic; it didn’t appear to be anything
worth addressing, after all. But I decided, what the hell, we’ve got the
appointment with the specialist, let’s go ahead and keep it.

I fully
expected it to be a typical initial consultation. I expected them, like running
a credit card, to see if Rio’s insurance was “good,” shake hands, look at the x-ray
and say, let’s meet again in six months.

I was
wrong. The other shoe was about to drop.

The
University’s Carrie Tingley Hospital takes care of sick kids with “complex
musculoskeletal and orthopedic conditions.” It’s a depressing place. The
outpatient clinic has a 1950 institutional look to it, a down-on-it’s luck 1950
institutional look. It’s old and worn out. The staff were friendly, but it was
a depressing place, not only because the building looked old and worn out, but so
too did all the patients. Children with adult souls trapped in twisted
malformed bodies. It was tragic beyond words.

First we
met with a nurse who took Rio’s vitals. Then we met with a resident who gave
Rio a physical exam and ordered another x-ray. She shook him up by asking about
clotting factors or any other issues that would prevent surgery.

Then we
ambled down the hall to x-ray, Rio freezing in a lightweight hospital gown and
disposable Tyvek shorts. Three x-rays later and we were back to killing time
the treatment room, looking at the archaic light box mounted on the wall for
viewing x-ray films back in the days before digital. Next to the light box was
a psychedelic smiley face poster. We were in the land that time forgot.

Rio was
very solemn. What are you thinking about?
I asked him.

He
hesitated, wringing his hands, then said, “I’m worried about surgery.”

I told him
with great confidence that no such thing was likely to happen and I had my
money on a just-come-back-in-six-months approach.

I was
about to lose my money.

Finally,
the doctor came in. He briskly introduced himself, pulled a chair up right in
front of Rio, looked him squarely in the eye and without preamble said, “Would
you hate me if I asked you to wear a brace?”

Rio and I
were thunderstruck, too surprised to reply at all. Finally I managed to wise-crack
that Rio would only hate him if he ordered surgery.

“It could
come to that,” said the doctor, “but I’m hoping to avoid it.”

That’s the
last point I remember clearly. I’ve been in a fog ever since. I’m like the man
who staggers from the car crash and can remember everything up to the point of
impact, but is missing all recall of the accident itself.

I’d been
rudely and abruptly transported into a parallel universe of medicine.

The twist
in Rio’s spine that looked like the boa constrictor passing a knot on a tree
was really the head of the cobra. The little detour was a “compensating” bend.
The rest of the snake was curled up in its basket in Rio’s lower back, where
his spine is bent and twisted to an angle of 38 degrees. The chest x-ray missed
the main event, but the specialists had known what to look for.

It wasn’t
moderate scoliosis. It much more serious, almost to the point where surgery is required.
The snake had been lurking deep in the body of my perfect-looking child for
several years, and time was short to change to course of the disease. He has
only 2 or three years of bone growth left.

He will
need to wear body armor like Star Wars storm troopers from neck to tail bone.
He’ll need to wear it at least 18 hours a day. Or 21. Or 23. It depends on
which of the experts we spent the day with that you listen to. The word
“compliance” hung heavily on the air in every conversation. How important compliance
was. How compliance would reduce the risk of surgery. How compliance would make
the difference between a normal adulthood and one made up of chronic back pain
and mobility issues.

All the
concerns over compliance told me that the brace, called a Boston Brace, must
not be very comfortable.

Then we
were packed off with Google directions to drive to a place across town where
Rio would be measured for his new armor. One look at the directions and I knew
we’d been given a route that involved a closed off-ramp. I’d have to do some
dead reckoning to get there.

We drove
off in silence. I asked Rio what he was feeling, and he did not answer me. He
sat, gazing out the window, forlorn. A beaten dog, all the life gone out of
him. I wanted to cry. I wanted to scream. I wanted to take this away from him.

But I was
powerless.

I placed a
hand on his knee and we drove on through the city in silence.

At the prosthetics
place, a number of gruesome trophies hung on the wall. Tiny infant-sized helmets
to overcome distorted skulls. Tennis shoes for people missing one foot. Spare
breasts for women who’d lost one of the ones God gave her to the pink ribbon
battle.

Modern
medicine. The reaper of the flesh.

I was in a
complete daze. My wonderful, kind, sensitive child was suffering. I felt
helpless and riddled with guilt. Should I have spotted this earlier? Was I a
bad parent for not noticing the slight rise of one shoulder, the slight gap
between arm and torso, the bulge on his back from his twisted rib cage? And
then there was the real guilt. The guilt over the complication that I, of all
people, should have been able to prevent. The doctor told me he preferred to
treat skinny children. Rio’s substantial belly, a battle I’ve been losing for a
decade, would make the brace harder to manufacture and less likely to work.

I had
doubly failed in my sacred duty as a parent.

Then we
met the tech, who to my mind was the orthopedic equivalent, of, well, me. She
is to scoliosis what Wil is to diabetes. I recognized a kindred spirit at once.
She put Rio at ease. She put me at ease. She patiently explained to us all the
things the doctor didn’t bother to. I suddenly felt myself in the shoes of my
patients—brutalized by doctors, rescued by educators.

She was
bubbly and upbeat. She assured us we could do this. She plugged us into the
social media world of bent spines. Blogs, support groups, online stores, Facebook.
There’s a whole sister world to ours out there beyond our horizons. I guess I
knew that, but I never thought much about it.

And I
wanted no part of it. Isn’t diabetes enough?

She put Rio
in a super tight-fitting muscle shirt that showed every lump and fold of fat on
his body. She taped a sensor on his back and then began scanning him, sweeping
a beam of light up and down his body, and on the screen of her computer, a 3-D
image of Rio’s torso was formed in minute and exact detail. Rio’s armor would
be more pear-shaped than the wedge of white plastic the storm troopers wear.
Rio would need to sleep in this medieval armor. Walk in it. Eat in it. Play in
it. Go to school in it. Rio was in for some rough years. Filled in off-and-on
by phone, his mother cried all day at the thought of her baby locked into a
turtle shell for the waning years of his childhood.

I know in
my head that we are lucky. This thing has a beginning and an end. It’s not
forever, nor is it fatal. It will be hard on him, on me, on his mother, and on
the grandmothers. But this is not more than we can handle. But in my heart…
Well, that’s breaking.

We parents
would take any burden upon our bodies to spare ourselves the burden placed on
our souls that watching our children struggle or suffer causes.

If I could
lift this burden from him I would do it in a millisecond. But those types of cosmic
choices are the stuff of fairy tales. In the real world we do not get to choose
our burdens. Of course, we will make it through this. Of course, in the end, it
will somehow make sense.